Hey everyone, it’s Edward from a couple articles down. Sorry for making a new article instead of commenting, I felt that it was not going to be as seen as just a comment and I want everyone to read this because I understand that not everyone lives in a country where most of your medical treatments are covered.
To start off, I unfortunately was not diagnosed with Cholinergic Urticaria because I was missing a symptom or two, but please take what I am writing into consideration. What I have also falls under the same category as Cholinergic Urticaria. To quote what he said, he told me that people with Cholinergic Urticaria have red spots and during summers, they most likely will suffer from the symptoms (E.g. hives/red spots) as well, where I did not. What I have is what he diagnosed me with, which was called “Spontaneous Urticaria” (that is the shortened term he gave me). A few tests were run through, which included bloodwork (after the appointment I went to a medical center), a breathing test (my results were perfect), and an allergy test to see if my condition was actual just an allergy or happening due to my immune system. The bloodwork has not come in yet, but our conclusion is that it is most likely not due to an allergy, and is an immune-related thing.
So the first thing we should all consider is whether or not we might be confusing Cholinergic Urticaria with a different type of urticaria, because it would really help out your doctor to be as detailed as possible. For example, I read about how Cold Urticaria can be confused with Cholinergic Urticaria a lot because Cold Urticaria happens when you go from cold to hot, and Cholinergic Urticaria generally happens when you sweat (which in many cases is when your body temperature also goes from cold to hot).
My specialist (immunologist/allergist) prescribed me an anti-histamine called Desloratadine. The first thing you need to know about this is that it is not the same as Loratadine. My specialist also stated that this has no side effects, while at the same time, it works as an anti-histamine. Definitely beats those drowsy side effects from some anti-histamines!
VERY IMPORTANT NOTE
I told my specialist how my general practitioner gave me 20mg Reactine pills, and how it was directed from my general practitioner that I would only take them maybe once every few days.
My specialist stated that this is chronic, and gave the example of high blood pressure. You wouldn’t take medicine for that just every few days, right? It doesn’t work like that. For those who don’t know too much about blood pressure, another example would be birth control pills. You those anti-histamine drugs balanced in your blood stream, just like how you would want to regularly take birth control.
My specialist told me to take one pill of Desloratadine everyday and to have a follow up appointment in a couple months to see him again. I’ll definitely have results for you guys about my bloodwork (which will state immunology/allergen related results), as well as my progress with Desloratadine (most likely after the follow-up appointment).
Even More Important Note
For those who are considering to try Desloratadine (which is also an over-the-counter anti-histamine), I should note that my take-one-everyday Desloratadine is 5mg per tablet. If the Desloratadine tablets offered at your local pharmacy is 10mg or more, you will want to remember to split up the pill or contact a doctor about wanting to take Desloratadine.
A couple final notes:
For those who may feel that they also have spontaneous urticaria, I have a photo of some hives on my leg that I took (this is the clearest photo I have, or I’d show you my arms as well)
http://i59.tinypic.com/296klm0.jpg
Also, for those who think they have spontaneous urticaria, my specialist stated that this specific urticaria/condition lasts (on average) for 2 years.
Some final things:
Thanks Hivesguy for making this site! It was nice to find an online support group to read about conditions I (well, close enough anyways) have and read about others experiences/solutions to their problem.
I hope Desloratadine works out for me and as well as those who want to try it out! I’ve been dreading for almost 2 years now, trying to find a solution.
Finally, if you guys have any questions, I’d love to answer them over the next few days that I’ll be visiting the forum, and as said, I’ll have an article for when I finish my follow up appointment!
Thanks for reading!
-Edward
Hivesguy says
Thanks so much for coming back and sharing how things went, Edward.
I did find a couple of things interesting about your experience. First, your doctor used the term “spontaneous urticaria.” I’ve never heard that term before today (although there are many different types/lables of urticaria).
According to one artcle I found online, it says this: “There are several syndromes of chronic urticaria (CU) in which symptoms are elicited by specific physical factors. These include dermographism, delayed pressure urticaria, cholinergic urticaria, local heat urticaria, and cold, aquagenic, solar, and vibratory urticaria. Another term that is gaining in favor is “chronic spontaneous urticaria” (CSU), which excludes physical urticaria syndromes”
So this seems to be a relatively new “classification” doctors are giving, but it seems to exclude physical urticarias. If your symptoms come out due to a physical stimulu (ie, heat), then by definition, it would be physical type of urticaria. Do your symptoms come out only due to an increase in your body temperature? You didn’t really specify that clearly in your last post.
Another interesting point is that you said your doctor said this: “To quote what he said, he told me that people with Cholinergic Urticaria have red spots and during summers, they most likely will suffer from the symptoms (E.g. hives/red spots) as well, where I did not.”
I’ve never in my life heard that before, and that actually contradicts some studies of cholinergic urticaria I read when preparing my book, which actually stated that some people tend to only suffer with the condition in the winter months. Based on the many experiences of people on this forum, it is a pretty commonly known fact that during the summer months some people with CU tend to have fewer symptoms (or even no symptoms), as their bodies can sweat more regularly and acclimate to the hot, humid weather. Cu can become much worse during the winter, as the body is less adapted to sweating.
I’m not saying your doctor misdiagnosed you, but if your symptoms persist (and come out due to a physical stimuli such as heat), it may be worth looking into a second opinion (perhaps during the winter when your symptoms are more prevalent, and they can see that it does indeed respond to a heat stimuli).
Nevertheless, it seems he is treating you with an antihistamine, which would pretty much be the exact same treatment most doctors would give if you were diagnosed with Cholinergic Urticaria. So it doesn’t make much difference, I guess. I’d follow what he told you to do, and if you have doubts over time, I’d get a second opinion.
Anyway, I certainly hope it provides you some relief. Thanks for sharing, and I certainly hope your hives get better.
Anonymous says
Hey Hivesguy,
Sorry about the lack of detail. I did get an exact diagnosis name from the specialist, but he also told me the simplified version and I used that one because I felt it would be easier for everyone! What he diagnosed me with was “Chronic Spontaneous Urticaria with physical urticarial syndromes.” I think it is really important to mention that one of the symptoms I lacked from cholinergic urticaria, would be the redness and red flushing of the skin. I have never had flushing in any part of my body except my chest, where as on your website, I saw that symptoms included flushing of the skin (like on the face and knee). Also, my hives weren’t as red either as I’ve seen on this website. It’s a bit ironic actually, haha, I know I mention my general practitioner being wrong at times, but when I mentioned cholinergic urticaria to my GP, he actually told me to search photos online because he claimed “it doesn’t look like cholinergic urticaria”, and I’ll be honest, it upset me a bit because I felt so strongly that I had something at least similar to cholinergic urticaria!
As for your description about winter/summer symptoms being stronger/weaker, I completely agree! I read so many articles, as well and studies, but I think we all need to take into consideration that any mistakes could be made, including my specialist.
To emphasize my point, when I went to my general practitioner, I talked to him about Cholinergic Urticaria at some point, and he kept claiming that I did not have hives, which made absolutely no sense because of course, I had the photos as proof. When I went to my specialist and showed him the photos, he said that I most definitely have hives. No doubt about it.
My specialist may have a biased opinion about cholinergic urticaria because of previous patients he had with cholinergic urticaria, but one thing’s for sure is that we all have different severities and levels of this condition. The perfect example would be Sally (who commented on my previous article) about how she has cholinergic just as bad in winter AND summer!
In my personal opinion, I don’t think anyone could be wrong (except my general practitioner claiming I didn’t have hives), but I definitely think that we all need to consider that others have different severities and levels of similar conditions!
I also agree with your paragraph about my specialist only treating me with an anti-histamine at the moment, but I’m really going along with it because I think this time some progress is finally being made. My specialist has taken extra procedures for my condition to make sure that it is 100% auto-immune and not at all an allergy with a follow up appointment as mentioned before to see my progress! I think it’s great that I know extra precautions are taken before anything drastic, such as an allergy shot. I’ve been really wanting an allergy shot to see how that might affect my urticaria condition!
Though, it definitely beats taking in 20mg of Reactine from a general practitioner that seems to not care at all. I actually find it really unfortunate that some doctors these days just seem to shrug off some patients…
Sorry again for not being too detailed with my last post! If anything needs more explaining, I’d love to do so!
Best of luck to all,
-Edward
Hivesguy says
Ah, thanks for the additional details. Well, I certainly hope that the antihistamine gives you relief. A lot of people do manage their hives well with them, whereas others don’t get much relief. We’re all different, and our bodies respond differently to different treatments. Keep us updated on how things unfold over the next few months for you. Best wishes.
Edward says
Oh, for sure! I’ve gone through so many antihistamines, that I thought none of them would ever come through. This is the first time I’m trying out Desloratadine, and hopefully it does come through for me, but if not, there’s always the more serious option of an allergy shot I have ahead of me!